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Perception of Caregiver Burden

18 Years
Not Enrolling
Brain and Central Nervous System Tumors, Chronic Myeloproliferative Disorders, Depression, Leukemia, Lymphoma, Multiple Myeloma and Plasma Cell Neoplasm, Myelodysplastic Syndromes, Myelodysplastic/Myeloproliferative Neoplasms, Psychosocial Effects of Cancer and Its Treatment, Unspecified Adult Solid Tumor, Protocol Specific

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Trial Information

Perception of Caregiver Burden



- To measure psychosocial correlates of desire for hastened death (DHD) and change in DHD
in patients with late-stage cancer by examining the relationship among a patient's
perception of being a burden, their caregiver's perceptions of the patient's
burdensomeness, and DHD changes over time.


- To identify coping and personality factors in both caregivers and patients that may be
related to the patients' DHD and changes in their DHD.

OUTLINE: Patients and caregiver dyads complete questionnaires at baseline, 2 months, and 4
months. The dyads complete demographic questionnaire, the Hospital Anxiety and Depression
Scale (HADS), the Beck Hopelessness Scale (BHS), the Dyadic Adjustment Scale (DAS), and the
Life Orientation Test-Revised (LOT-R). Patients also complete the Schedule of Attitudes
Toward Hastened Death (SAHD), the Brief Coping Orientation to Problems Experienced (Brief
COPE), the Memorial Symptom Assessment Scale-Short Form (MSAS-SF), and the Caregiver Demands
Scale (CDS). Caregivers also complete the Katz Index of Independence in Activities of Daily
Living (IADL).

Patients' medical charts are reviewed for stage and node status at primary diagnosis,
previous oncology surgeries, previous adjuvant treatments, treatment at time of recurrence,
disease free interval, site of metastasis, and response to current treatment.

Inclusion Criteria


- Meets 1 of the following criteria

- Patient with a diagnosis of cancer

- Confirmed late-stage disease refractory to standard primary therapy

- Reside with a non-paid primary caregiver

- Receiving care at the Cancer Institute of New Jersey

- Caregiver

- Must be at least 18 years old


- Life expectancy ≥ 4 months

- No documented or observable cognitive (e.g., dementia) or psychiatric (e.g.,
psychosis) problems that would interfere with study participation

- Able to read and write English (patient and caregiver)


- Not specified

Type of Study:


Study Design:

Observational Model: Cohort, Time Perspective: Prospective

Outcome Measure:

Relationship between patient's sense of being a burden on primary caregiver & increase in patient desire for hastened death (DHD) by Caregiver Demands Scale (CDS) at baseline & Schedule of Attitudes toward Hastened Death (SAHD) at 2 & 4 mo.

Safety Issue:


Principal Investigator

Linda Patrick-Miller, PhD

Investigator Role:

Principal Investigator

Investigator Affiliation:

Cancer Institute of New Jersey


United States: Institutional Review Board

Study ID:




Start Date:

May 2008

Completion Date:

January 2010

Related Keywords:

  • Brain and Central Nervous System Tumors
  • Chronic Myeloproliferative Disorders
  • Depression
  • Leukemia
  • Lymphoma
  • Multiple Myeloma and Plasma Cell Neoplasm
  • Myelodysplastic Syndromes
  • Myelodysplastic/Myeloproliferative Neoplasms
  • Psychosocial Effects of Cancer and Its Treatment
  • Unspecified Adult Solid Tumor, Protocol Specific
  • depression
  • psychosocial effects of cancer and its treatment
  • unspecified adult solid tumor, protocol specific
  • acute undifferentiated leukemia
  • adult acute lymphoblastic leukemia in remission
  • adult acute myeloid leukemia in remission
  • adult acute myeloid leukemia with 11q23 (MLL) abnormalities
  • adult acute myeloid leukemia with inv(16)(p13;q22)
  • adult acute myeloid leukemia with t(15;17)(q22;q12)
  • adult acute myeloid leukemia with t(16;16)(p13;q22)
  • adult acute myeloid leukemia with t(8;21)(q22;q22)
  • atypical chronic myeloid leukemia, BCR-ABL negative
  • chronic myelomonocytic leukemia
  • mast cell leukemia
  • meningeal chronic myelogenous leukemia
  • prolymphocytic leukemia
  • recurrent adult acute lymphoblastic leukemia
  • recurrent adult acute myeloid leukemia
  • recurrent adult T-cell leukemia/lymphoma
  • refractory chronic lymphocytic leukemia
  • refractory hairy cell leukemia
  • relapsing chronic myelogenous leukemia
  • secondary acute myeloid leukemia
  • T-cell large granular lymphocyte leukemia
  • AIDS-related diffuse large cell lymphoma
  • AIDS-related diffuse mixed cell lymphoma
  • AIDS-related diffuse small cleaved cell lymphoma
  • AIDS-related immunoblastic large cell lymphoma
  • AIDS-related lymphoblastic lymphoma
  • AIDS-related peripheral/systemic lymphoma
  • AIDS-related primary CNS lymphoma
  • AIDS-related small noncleaved cell lymphoma
  • HIV-associated Hodgkin lymphoma
  • recurrent adult Hodgkin lymphoma
  • anaplastic large cell lymphoma
  • angioimmunoblastic T-cell lymphoma
  • cutaneous B-cell non-Hodgkin lymphoma
  • recurrent cutaneous T-cell non-Hodgkin lymphoma
  • recurrent mycosis fungoides/Sezary syndrome
  • adult grade III lymphomatoid granulomatosis
  • adult nasal type extranodal NK/T-cell lymphoma
  • Waldenstrom macroglobulinemia
  • extranodal marginal zone B-cell lymphoma of mucosa-associated lymphoid tissue
  • nodal marginal zone B-cell lymphoma
  • splenic marginal zone lymphoma
  • recurrent adult Burkitt lymphoma
  • recurrent adult diffuse large cell lymphoma
  • recurrent adult diffuse mixed cell lymphoma
  • recurrent adult diffuse small cleaved cell lymphoma
  • recurrent adult grade III lymphomatoid granulomatosis
  • recurrent adult immunoblastic large cell lymphoma
  • recurrent adult lymphoblastic lymphoma
  • recurrent grade 1 follicular lymphoma
  • recurrent grade 2 follicular lymphoma
  • recurrent grade 3 follicular lymphoma
  • recurrent mantle cell lymphoma
  • recurrent marginal zone lymphoma
  • recurrent small lymphocytic lymphoma
  • intraocular lymphoma
  • primary central nervous system non-Hodgkin lymphoma
  • primary central nervous system Hodgkin lymphoma
  • chronic eosinophilic leukemia
  • chronic neutrophilic leukemia
  • primary myelofibrosis
  • primary systemic amyloidosis
  • refractory multiple myeloma
  • previously treated myelodysplastic syndromes
  • secondary myelodysplastic syndromes
  • myelodysplastic/myeloproliferative neoplasm, unclassifiable
  • Neoplasms
  • Depression
  • Depressive Disorder
  • Leukemia
  • Lymphoma
  • Lymphoma, Non-Hodgkin
  • Multiple Myeloma
  • Neoplasms, Plasma Cell
  • Plasmacytoma
  • Myelodysplastic Syndromes
  • Preleukemia
  • Myeloproliferative Disorders
  • Nervous System Neoplasms
  • Lymphoma, Large-Cell, Immunoblastic
  • Central Nervous System Neoplasms
  • Myelodysplastic-Myeloproliferative Diseases



Cancer Institute of New Jersey at UMDNJ - Robert Wood Johnson Medical School New Brunswick, New Jersey  08903